Monday, January 28, 2013

Busy as usual. Or, maybe more busy than usual. I'm just too tired to backup, so here's the quick recap:

E had her eye checkup. No new news. Elena has two healthy eyes that don't work that well together. She has esotropia (since birth) and has had three eye surgeries for strabismus/esotropia. Her eyes still drift, with the right one being worse than the left. The good news here is that she does use both of her eyes, they both register with her brain, sometimes together. Further surgeries aren't going to fix her vision issues, but later on she may opt for a procedure to align her eyes better (largely for cosmetic reasons). Her depth perception is not good, but she's never known anything differently so it's her version of normal. She is also slightly nearsighted, so that's built into her prescription. No big changes, but she'll be getting new glasses to account for growth.

Before the cold weather snap, E's been on her bike a lot. We went on a local trail (pretty flat, but had a few little hills and turns) and it was WINDY and she was fantastic. She rode for 2 miles with minimum help (and I did have to catch her one time).

We had some snow. The weather turned straight-up frigid here after a very mild winter, and I made the best I could out of snow days and got the kids on sleds as soon as I could. I took them to a giant hill, hoping that E and Viv would stay on a sled--WHICH THEY DID! The hardest part of that morning was actually getting snow gloves on E's hands. It took almost 15 crying minutes. I knew we couldn't give up; she needed a waterproof, tight-fitting glove so her hands wouldn't freeze off when wet--very important, since Elena will definitely have her hands on the ground more than Vivian due to falls or trouble staying upright. Once the gloves were on, they worked beautifully.

Side note:Good thing I'm working out a little more. Towing two sleds and carrying E up that hill is no joke.

Tuesday, January 1, 2013

We took the girls out to a track to test out their bikes. Elena got a new bike for Christmas; Vivian is trying out the one Elena used to use.

These videos are taken from the end of our almost 1-hr session; in the beginning, E was frustrated because she kept losing her footing on the pedals. (Biking without her feet strapped to the pedals is relatively new for her).

It's not evident from these videos but Vivian also had trouble with the bike at first. Both Viv and E are quick learners--but obviously Viv has an easier time with this sort of thing. By the end of of our time, Viv was biking well (but pretty tired, she said her legs hurt) and E had made significant progress. I think it will be much more difficult for Elena to feel where her feet are while wearing braces...we are considering putting adult-sized pedals on her kid-sized bike.

1. Complete the Blue Ridge Marathon. Elena and Vivian are already registered; they have until April 20th to log in 25.2 miles, and then they'll finish the last mile with the marathon runners! We'll be keeping track of her progress, so stay tuned!

2. Catch a frisbee.

3. Put in her own earrings. She needs to stand steady and tall so she can use both of her hands.

4. Play mini golf by without help.

5. Get ready for bed by herself, in 10 minutes. Meaning, use the bathroom, wash hands, brush her teeth, get into bed, get her own covers on (it is difficult for her to get over her covers and then underneath them without help) and wait for me to tuck her in. I think she can do this, but we've never tried it all at once and under a specific time frame.

6. Leave the house, with her own backpack on, and get on the school bus while we watch. Normally she is under close supervision, with us ready to catch her (we are in front of her, going backwards down the steps) and we are carrying her backpack. I always worry with her going down the stone steps, but she has only fallen once (and managed to end up on the grass, not sure how that happened). Obviously this will wait until the cold/icy weather has passed.

7. Stretch with the Dynasplint 3x week. We should be doing this more often, but realistically, we don't have that much time in a day to do everything.

8. Do CME exercises, or similar type balance play on playgrounds, 3x/week. Hopefully we can fit this in the schedule...

9. TAKE SWIM LESSONS

10. Ride bikes!

11. Sleep in a tent!

12. Take the kids to the movies. E doesn't like to sit still that long--it might depend on the type of movie. I also worry a bit about the noise level, b/c it is so darn LOUD in a theater!

Elena's own goals:

1. Climb the rock wall at PT by herself. (It's new and it's awesome!)
2. Take piano or voice lessons.
3. Have an Easter Egg Hunt outside the house.
4. Spend time in the snow--sledding and skiing.

Bonus Vivian goals:

1. Roller skate
2. Make her own toast
3. Play frisbee with a dog (E likes the addition of a dog too)
4. Write a letter (she can write her name)

And goals for me:

1. Spend more time with grown-ups. (Advice on where to fit this in?)
2. Continue to do something after the kids go to bed. I have been doing well at staying up to cook, clean, or hang out with Jason, etc. This is a work in progress but it's going well.
3. Run/bike some races around town.
4. Paint the foyer of the house. It's got E's handprints all over it from learning to walk over the years, and it's WAY overdue.
5. Learn how to use my new sewing machine! I've been doing all the girls' costumes, Scout badges, and clothes alterations by hand...it'll be a snap once I figure out the machine.
6. Find a babysitter. We LOVE our Fantastic Nanny Annette, but we need to find an alternate in the hope of having a date night every now and then. It would be good to introduce the girls to a different caretaker if we are away.

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Mission Statement

No one plans, or expects, to have a child with a disability. When this happened to us, we started a desperate search to find information relating to milestones or expectations for our daughter after her diagnosis. Most of this was fruitless. My hope is for this site to help any person or parent in a situation similar to ours.

About Me

I'm a work-hard, play-hard multitasking wife and mother of two. I'm lucky to have a supportive family and friends, and live in a great town for children with (and without) disabililties. Elena is my firstborn, born at 33w with moderate spastic diplegia. Vivian is my secondborn--almost at 28w, but with a lot of help, made it to 38 1/2w and developing normally; she was diagnosed with focal epilepsy at age 9.